FRIENDS... I need a break!!
I planned on this season being about renewal and exciting changes. I planned on getting my pre-mom body back and stepping up my health overhaul.
I'm on month 11 of nonstop fever, joint pain, facial rash, migraines and extreme fatigue. My body is waging a war against itself...its ridiculous!! I've seen countless types of doctors and been poked and prodded over and over. No answers!
Currently waiting for genetic testing to find a suspected mutated cell...I mean come on!! Can this mama catch a break?!?
Another tough part of it all, who can I talk to about this? I've kept it so close to the vest, thankfully I do have some awesome people in my life that have stepped in as family. I can talk to them about everything, but I can't express the fear to them or anyone else. I don't think anyone will understand, but really I'm afraid to burden anyone with my struggle. At the same time, I'm tired of pretending that I feel well or that everything is wonderful. It's not! And I don't feel well!!
I'm on a temporary medication that has really helped stall my symptoms. But it's a medication that I can't be on for much longer because of the damage it can cause, it's not meant to be a long term fix. Doctors have told me that there is a course of treatment for what they suspect is going on in my body, it entails either 8 infusions spread out through the year or a shot a year for the rest of my life.
I planned on this season being about renewal and exciting changes. I planned on getting my pre-mom body back and stepping up my health overhaul.
I'm on month 11 of nonstop fever, joint pain, facial rash, migraines and extreme fatigue. My body is waging a war against itself...its ridiculous!! I've seen countless types of doctors and been poked and prodded over and over. No answers!
Currently waiting for genetic testing to find a suspected mutated cell...I mean come on!! Can this mama catch a break?!?
Another tough part of it all, who can I talk to about this? I've kept it so close to the vest, thankfully I do have some awesome people in my life that have stepped in as family. I can talk to them about everything, but I can't express the fear to them or anyone else. I don't think anyone will understand, but really I'm afraid to burden anyone with my struggle. At the same time, I'm tired of pretending that I feel well or that everything is wonderful. It's not! And I don't feel well!!
I'm on a temporary medication that has really helped stall my symptoms. But it's a medication that I can't be on for much longer because of the damage it can cause, it's not meant to be a long term fix. Doctors have told me that there is a course of treatment for what they suspect is going on in my body, it entails either 8 infusions spread out through the year or a shot a year for the rest of my life.
I've been diagnosed with an Auto-inflammatory disease, just waiting for results of the genetic testing to show us which type I have. It's wild to think that this could be the answer to all the health issues I've struggled with for the last 12 years.
(07/08/2019)
Update:
My genetic tests came back with (FMF) Familial Mediterranean Fever. I'm trying to learn as much as I possibly can about it, but I've yet to wrap my mind around it all. I've just seen a specialist in this field and he wasn't much help. He didn't explain what FMF is exactly...he seemed to want to treat with a bandaid type treatment, a mask it and tend to symptoms rather than a long term solution. My biggest frustration is that, if I don't understand it how can I expect anyone else to?
(10/18/2019)
Update:
The temporary fix, which was a high daily steroid intake, only caused further harm. In December I experienced a TIA, a mini stroke, caused by the amounts of steroids in my system. The steroids caused my body to go through an Adrenal Crisis which then caused a mini stroke. I woke up one morning feeling like there was a line drawn down the middle of my body. My right side totally normal but my left side was weak and felt like it was on pins and needles. My chest was tight along with the weakness and I was experiencing heart palpitations along with my hands turning dark blue..It was so bizarre. Thankfully I was on the phone with one of my sisters one afternoon and I was telling her about all this stuff and how it felt like it was increasing. She immediately told me she was coming to get me and taking me to the emergency room. It was there that we learned that I had infact had a TIA. We then followed up with a cardiologist and after many tests and being on a heart monitor for a week we learned that the adrenal crisis had caused my heart to not pump enough blood to an area of my brain causing everything that followed. We also learned that one of the upper chambers in my heart has an extra beat, thankfully that's not something that causes great concern but will have to be checked every 6 months to a year. In February I was told that I'm stable with no damage to my heart or brain from the TIA. Praise the Lord!! I've since taken a break on all medication to treat FMF.
My genetic tests came back with (FMF) Familial Mediterranean Fever. I'm trying to learn as much as I possibly can about it, but I've yet to wrap my mind around it all. I've just seen a specialist in this field and he wasn't much help. He didn't explain what FMF is exactly...he seemed to want to treat with a bandaid type treatment, a mask it and tend to symptoms rather than a long term solution. My biggest frustration is that, if I don't understand it how can I expect anyone else to?
(10/18/2019)
Update:
The temporary fix, which was a high daily steroid intake, only caused further harm. In December I experienced a TIA, a mini stroke, caused by the amounts of steroids in my system. The steroids caused my body to go through an Adrenal Crisis which then caused a mini stroke. I woke up one morning feeling like there was a line drawn down the middle of my body. My right side totally normal but my left side was weak and felt like it was on pins and needles. My chest was tight along with the weakness and I was experiencing heart palpitations along with my hands turning dark blue..It was so bizarre. Thankfully I was on the phone with one of my sisters one afternoon and I was telling her about all this stuff and how it felt like it was increasing. She immediately told me she was coming to get me and taking me to the emergency room. It was there that we learned that I had infact had a TIA. We then followed up with a cardiologist and after many tests and being on a heart monitor for a week we learned that the adrenal crisis had caused my heart to not pump enough blood to an area of my brain causing everything that followed. We also learned that one of the upper chambers in my heart has an extra beat, thankfully that's not something that causes great concern but will have to be checked every 6 months to a year. In February I was told that I'm stable with no damage to my heart or brain from the TIA. Praise the Lord!! I've since taken a break on all medication to treat FMF.
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